Does therapy really help insomnia? Doubtful….

I read a study stating that CBT helps insomnia. Or so said the headline and introductory bit. This was a recent study done in Britain.

The subjects had suffered insomnia three months or less. Interestingly enough, 15% got better with no treatment at all. So saith the study. But what does “no treatment” mean? I highly doubt the patients, during that time, made no effort to improve sleep on their own. I highly doubt they threw out their own ability to use logic and common sense. Also, since they didn’t have insomnia very long, I can see that for most of these patients, the condition would have improved anyway.

Then, reading further, I discovered that this CBT the patients were receiving was nothing more than common sense advice on sleep. Gee, why are we giving these “therapists” our business at all? Why become therapy-dependent when we can research these things on our own and retain the freedom to try out what works for us?

I will never forget just how unhelpful the “treatment” was that I received at the McLean sleep clinic back in 1999.  Yep, that place is world-renowned. I met weekly with a sleep doctor who insisted that I keep a detailed sleep diary. What this did was to cause me to obsess over sleep. This of course worsened the insomnia.

Not once did they give a shit about the cause. You’d think this would be a primary goal. Nope. They “advised” me to do things that did not come naturally to me such as changing my sleep hours, again, worsening the insomnia.

I had been referred to them by my shrink, Dr. Michael Detke. Thank god I only had this incompetent fool for a year!  He claimed the insomnia was due to depression. This was backwards. I was getting increasingly pissed off that the problem was taking so long to solve. I even missed a term of college because my sleep had gotten so bad I couldn’t function academically.

So he was claiming that depression was the cause, negating what I was saying and not listening to me at all. He repeatedly raised my Effexor.

Did this man not know that one of the most observed side effects of  Effexor is insomnia? He had me on more and more and my sleep got worse and worse. Meanwhile, the sleep clinic doctor told me, “I am not even going to pay attention to your medications, since they are dealt with by your psychiatrist.”

I wondered which idiots I should believe. The sleep doctor kept yapping about “sleep hygiene.”  There was nothing wrong with my sleep hygiene, and his mucking with it of course didn’t work. The insomnia had been caused by Effexor all along.

This sleep doctor wanted to believe only that he was a great hero who had solved my problem. So I went to him telling myself I needed to stop seeing him. I didn’t need to say anything about terminating. I remember I was sitting in his office, nodding off right in front of him while he yapped on and on about how much I had “improved.” I didn’t even argue. He told me I was a success story and that I didn’t need to come back. I left that place not knowing whether to laugh or cry. Why are doctors such experts at not listening?

I went to see Dr. Detke later on. By then, of course, I hated the dude. He told me he was not seeing patients next year due to his schedule. Oh wow, I get to get rid of him! I left his office immensely relieved.

The next shrink did indeed look into the possible cause. Trust me, he didn’t even have to look far. Right away, I told him what “meds” I had been taking. He looked surprised, as many doctors did, that I knew them for memory, including doses and what classification each “med” was.

After that surprise, which I was accustomed to since I was Queen of Knowing My Meds, he still had that shocked look on his face. His jaw had literally dropped when he heard just how much Effexor Detke had put me on.

i can imagine what went through Brendel’s mind. I imagine he was just as relieved as I was that I was no longer seeing Detke. I know he kept his opinion to himself, but I knew what he was thinking.

Brendel took me off Effexor. That solved the problem! This was after wasting months and months of my life trying to “fix” insomnia by barking up the wrong tree. I really think that to treat insomnia with band aid cures such as pills or “therapy” and refusing to look for the cause is complete backwards idiocy. Especially when the cause was staring them in the face.

Not that I would recommend Brendel to anyone. Years have passed. Sadly, he’s now hooked on a power trip and I would highly recommend staying away. He was good when he was a resident, though, and still had humility in him.

YOU are your own best doctor. Do not allow these people to enslave you with their claims of expertise. You are the only one who lives in your body. Take it back from these fools.

Further adventures with colorblindness

For those of you who don’t know me and are stumbling upon this post via random search, I wasn’t born colorblind, although I hear most people have some degree of difficulty discerning subtleties between shades. It’s rare to find a person who is completely not colorblind. I am not certain at which age our ability to see color is at its peak. Apparently science is only now figuring out that our dogs can indeed see color. I think those of us who love our dogs knew this all along, didn’t we? I’d say I have known some dogs whose vision was  much better than that of other dogs. The differences between humans are vast. I’m guessing that our vision varies far greater than science realizes.

Have you ever thought of what it would be like to be a different height? If you are a tall person, imagine being a foot shorter. If you are six feet tall, imagine being my height, five foot one. My height translates to 155 centimeters, or about a meter and a half, for those of you who use metric.

If I stand next to another adult who is standing, chances are I am looking up at that person. If the person is six feet tall, I am looking way, way up. If we are walking outdoors, that means looking right up with the bright sky behind the person’s head. I can’t even see the person’s face because it’s nothing but a silhouette to me.  Because I am short, everyone looks down on me and that affects how others view me, but this is not something others are conscious of. I, in turn, might not quite be aware that I am more on the defensive than a tall person, and feel the need to defend or back up everything I say. When I am seated and my height isn’t apparent, these dynamics aren’t really there. In most classroom situations, the students are all seated. In college, it often took an entire term before someone would say, “I never realized you were that short.”  I felt on even terms with the other students and I thrived in college situations, but that wasn’t the only reason.

Wheelchair users tell me the same thing, that no one really understands what it’s like to have to look up at your peers. My former college advisor Kenny Fries, who is several inches shorter than me, often remarked that his height was never apparent while he was seated, but as soon as he stood, life changed. This was because he was born with missing bones in his legs.

You can see how height affects vision. A short person lives with the earth closer and a tall person has a far off view of the ground by comparison. I cannot imagine having my life so high up from the ground. Could I even focus on it? If I were six feet tall, that might make the sidewalk a blur for me. I’d be far more likely to trip if there was a bump I didn’t see. On the other hand, there are many things I don’t see because I am not tall enough. On a bus or in a crowd, I cannot see over people’s heads. But I can go into small spaces and peek inside while a larger person won’t fit.

There are myths about colorblindness. People think of it in black and white. That you see in color or you don’t. That’s not true. Most see some color but have a small degree of deficit. I think as soon as you call it by a name, “colorblindness,” it sets up expectations in others. Maybe they think they have to explain traffic signals to you.  Or they think you shouldn’t drive or are glad you don’t.  From what I have read, red/green colorblindness is only one of the many types out there. When you get tested for it, red/green is the one you are tested for because the concern is your driving. You won’t be tested for other types in a routine exam. I believe some states test for this when you renew your driver’s license or they ask for an ophthalmologist note.

However, there are of course all types of colorblindness. I became aware of mine two years ago. The first sign was my tendency to lose objects. I mentioned this to someone. She said, “Oh, that’s just a senior moment. That means you are losing your memory.” I knew that wasn’t true! I was confident that this wasn’t the case.  I sure was getting tired of these assumptions, so I decided to see why I was losing so many of my belongings.

First of all, they’d always turn up. Consistently. I can count the number of times things were truly lost and never recovered. It’s never been a cell phone nor a laptop nor a huge sum of money. I think I’ve dropped five or six coins on the pavement and not been able to recover all of them. A few things have been lost in the laundry, too, with no explanation. I dropped my keys once, and left them on the table at the post office another time, and both times they were recovered at the post office the next day. To prevent this from  occurring again, I have my keys in my pocket but they are also tied to my belt. I haven’t misplaced them since! When I go out running, I tie a housekey into my shoe. I have also put mad money into my bra but it ends up sweaty. I wonder: If I had to use the mad money, I can’t, really. What do I say? “I can pay you. Excuse me while I reach into my bra and get the mad money.” How do you say that wicked politely in español? It’s okay to put a key in your bra but don’t run like that. It’ll hurt.

So I solved some of the “losing things” problem, but not really. I noticed a pattern. Only dark things got lost. I never lost brightly-colored objects such as a white shirt or those white ankle socks I love to wear.  My floor is dark, maybe that’s why. I haven’t had a light-colored floor in years. I really want one if I can get one. Not a rug. A real light floor. A nice bright room, not this dismal color I have now.

I do prefer dark colored clothing. I don’t like to stand out and I hate wearing feminine colors such as pastel, pink, yellow, lavender, light blue, or bright green. I never wear flowers.  Ick. I don’t know why, I have always disliked those colors. I won’t wear lacy clothing nor anything with decals nor pictures of animals nor movie stars. It’s rare that you see me wearing anything with any of these extras. I do wear scarves now and then to stay warm or because I’m concealing messy hair or I’m in the mood for covering my body. I often wear a hat to keep my hair from blowing in my face, which I find super annoying. Or to keep the sun off my eyes, also annoying.  One exception is that if I feel like dressing up, I wear a man’s or boy’s necktie. Not a clip-on. I tie them.

You are not going to believe this. I’m sure I’m opening myself up for nasty remarks by saying this. But this is just too funny to leave out.  I was at the feria a few months ago. I passed by a table piled high with clothing priced to my liking. I saw these shirts that were my size. The other shoppers didn’t want them because they were seeking larger sizes. I saw so many of these, in different colors, all small, priced low, too, and I told myself that it was so rare that I found cotton shirts that maybe I should buy one. Alas, across the front of each one said the word, in inglese, something like “fantastic” or some such thing. No way was I going to wear a shirt that said “fantastic” right across the bustline. Sorry, Feria Dude, no comprar. Don’t you hate it when the writing on a shirt totally ruins it?

I was busy doing other things yesterday and suddenly ran into a tech emergency. Of course, that’s when these tech emergencies happen. When you’re busy trying to use your computer and it dies on you. So I stopped in my tracks and fixed it, which took a few hours, but in the process I discovered a few new tricks that might help others who are colorblind like me.

You folks know I use f.lux to help cut down on blue light after sundown. This helps with insomnia immensely, in fact, in my case, cured it completely. I had the worst case of insomnia I’d ever heard of. So while I had this tech emergency I went and double-checked to see if f.lux had perhaps caused the problem. I can assure you that this had not caused the problem and there don’t seem to be any viruses nor toolbars nor adware associated with this program. This isn’t the same as the flux dot exe virus.

So I kept on doing my detective search for the cause of the problem. I looked into extensions. I found out just out of random curiosity that Google Chrome offers a blue light blocker on its browser. I would NOT suggest using it if you are already using f.lux. However, if f.lux isn’t working for you, or if you are having compatibility issues, try the chrome extension instead. It will only work for chrome and won’t block blue light from other programs. F.lux will change your entire screen. Keep this in mind. F.lux is a powerful program, entirely free.

For me, I have terrible trouble seeing the screen no matter what. I can’t read text the way it is. I cannot understand why they decided to make text very light gray with a white background. That was just plain cruel. I can’t see it. It’s like barely there. I struggle too much. I have had trouble distinguishing periods from commas and colons from semicolons for years.

I found the solution yesterday. At least when it comes to my browser. I use Chrome, and you can find this if you look in the Chrome store. It’s free. The best option seems to be “Hacker  Vision.” What it does is to replace the colors. You can try it and you will find it’s a lot easier to read text in the Chrome browser.

If you find you need to enlarge your view quickly, here’s a quick way to do it. Press your control key, hold it, then press the + sign. To quickly reduce, press the control key, hold it, then press the – key. Sometimes this will enlarge the entire screen and sometimes just the text. You can make it do just the text, or everything, depending on what application you are in. Usually this means going through “settings.”

Do you want to know what my tech problem turned out to be? These darned Win8 screens are a bitch. They crack if you breathe on them.

So one day, I looked into my Win8 touchscreen, and said, “Mirror, mirror, on the wall….” Well, why not? These screens are far too shiny. Might as well put them to practical use.

I got the rude response. I didn’t know it, though. I can’t see well enough to see some tiny microscopic crack. It’s most likely been sitting there for a week just to annoy me. Yesterday my whole system went manic. Windows closing, windows opening, programs jumping around. I tried giving my PC some Haldol. It gave me a line about forced drugging. I was so pissed. How dare it! Insubordination! Oh well, it takes after its mama. I trained it well. I got a junior activist here.

I had to disable the touchscreen to make the machine at all usable again. You can do this via “pen and touch” settings in “Control Panel” if the updates haven’t obliterated this option, or do it the way I did, through device manager. It’s too expensive to replace the touchscreen and just think: if I did, it’ll crack again as soon as I say, “Mirror, mirror.”

I might say, “Google” and be misheard, after all. They say in this day and age, you gotta watch what you say. Big Brother is cracking the whip.

 

Yes, “light therapy” works! Better than any pill!

I got this in my e-mail. I know people who have used “light boxes” and they say it really helps.

The change to daylight saving time in the fall confirms what many of us have been noticing for the last few months – our days are getting shorter, wetter and colder. For some of us with Seasonal Affective Disorder or SAD this is a very tough time of the year.

If we have SAD or the milder version called the Winter Blues, our energy level has begun to diminish, our mood is lower and that grey cloud outside might seem to follow us everywhere we go. As we get less exposure to sunlight our risk of depression increases. This biological process is amplified by our holiday preparations, shopping, financial concerns, family relationship issues and the like.

What can we do to counter the effects of SAD and the related year-end holiday issues? The good news is that there is much you can do to alleviate this problem.

Light Therapy is very effective for treating SAD and the Winter Blues. It helps 70 to 80% of the people who use it – more than for just about anything else you can do to treat depression.

What is Light Therapy? It’s getting exposure to light that is as bright as sunlight, early in the day usually with the help of a Light Therapy “Box” (appliance).

To use light therapy you put a light box off to the side or above you while you read or work on your computer. The light shines on your face – you don’t look directly at it. You do this for about 30 minutes first thing in the morning and it can really perk you up – usually in a few days to a couple of weeks.

While this works well for people with Major Depressive Disorder, if you have Bipolar Disorder or any eye problems you should check with your doctor first. Light Therapy, like antidepressants, can trigger mania, hypomania or mixed states in people with Bipolar Disorder. Likewise, light therapy can create problems for people who have eye issues.

NOTE FROM ME: I don’t believe in SAD. I think everyone slows down in winter. We’re supposed to! It comes from evolution. We need  to conserve energy because it’s cold out. Some gain weight in winter. Guess why? Because your body wants to be warm. You slow down because your body needs to conserve energy to keep itself warm and working efficiently. I do know that some are more affected by light changes than others. But why call this a disorder? There’s nothing “disordered” about it.

I do light therapy myself. I reduce light a few hours before bedtime. I use a minimal amount of artificial light at night. I wear amber glasses to block out blue light if I have to use artificial light. I even use candlelight rather than an artificial light that has more blue light in it.

I sleep much better and this “cure” has worked better than any sleeping pill I’ve ever taken.

It’s all about retraining your body to know, “It’s time to sleep.” We spend so much time in artificial light and this confuses our bodies into thinking they should stay awake. You can get programmed all wrong and end up rather frustrated, going from doctor to doctor and trying cures that cause more harm than good.

I know when it all started. It was triggered by abuse. I went to a “hospital” to get help for trauma I’d experienced in another hospital. But with all the artificial light and no sunlight at all during the day, my body got rather messed up with its schedule. What followed was over three years of the worst case of insomnia I’ve ever heard of.

My shrink terrorized me, calling me manic when I wasn’t. She tried one pill after another and none worked. She had stopped listening and I asked myself what the  heck was going on with her.

Now, I get plenty of sunlight during the day. I mean going right out into the sun. In the Northern Hemisphere, even in winter, the sun shines just fine. The snow will amplify sunlight and you can even get a sunburn in winter. Keep your eyes open cuz that’s how your body knows, “It’s time to be awake.”

Do expect to be feeling a little less energy in winter, the blues, or even feeling downright depressed. Guess what? You are human.

Amber glasses to block out blue light! Why is this such a big secret?

It is known that blue light, when seen with the eyes, tells the body it’s daytime, thereby causing a person to have difficulty sleeping. I started blocking blue light from coming out of my computer screen. It really works!

Looking back, I can analyze why I became sleep deprived in terms of light. This began suddenly following my horrific experience at Mass General Hospital in 2011. I had always thought the insomnia was the result of having had a slow heartbeat for so long. However, my heartrate has been okay for a while.

I looked at the idea of trauma, but that doesn’t make sense as the insomnia is consistent. If I am worried about something (such as money) I sleep the same as if I am feeling calm. The insomnia is not intermittent, it is every single night. I haven’t slept through the night at all in three and a half years. In fact, I’ve only slept an hour or two at a time. I am lucky now that I sleep in “shifts,” that is, I sleep two hours, get up, sleep two more, etc. Some nights I’ve woken up six or seven times, though. Sleeping pills don’t make my sleep any better. They are addicting and dangerous.

Nor does “sleep hygiene” do anything for me. It hasn’t made a bit of difference to use my bed only for sleep or to cut down on caffeine. Making those changes never worked for me and only made things worse.

I have tried various herbs, which may help slightly for a few days then quit on me. Changing my diet didn’t help. I really was feeling hopeless that I’d ever be able to function normally again, that is, be able to work or to go to school or to be productive at all. I told myself I might as well let myself die, since I lived in a nether world, half asleep and exhausted all day long.

I am trying to use light to help me sleep now, and I see a difference, though the placebo effect works, too. But I am hoping I am onto something at last.

The obect is to cut down or eliminate blue light as soon as the sun goes down. I’ve rigged my computer screen not to show blue light past sundown. It now glows amber.

So I thought; What about amber glasses? Wouldn’t that work? If I invented some, they’d sell like hotcakes.

It’s already been thought of:

http://www.ncbi.nlm.nih.gov/pubmed/20030543

But…if the experiment was so successful and sleeping pills so darned dangerous, why are they still pushing the pills?  It’s because you won’t convince anyone that glasses will work. But as you see in the study, they do. They are safer than pills by far.

Sweet dreams.

 

Are you a student, writer, or computer user who suffers from insomnia?

While doing another desperate search for answers to this persistent insomnia I have, I came across a little computer program that cuts down on screen glare when the sun sets in your region. I was skeptical but decided to give it a try. It’s so wicked cool!

Here’s the name of the program: f.lux. Go to justgetflux.com and you’ll find the program. That I know of, it won’t install a toolbar or other adware onto your computer, and it doesn’t even give you options to install those nasty things.

After installation, click on the tray icon and then the lines at the upper right of the screen. This will bring up settings. You can choose a color scheme to use right when the sun sets. All you have to do is to tell it where you are. It won’t use “location” on your computer. I looked on FAQ and found that having your computer set to the right time zone could possibly cause the program to dim at the wrong time. Go check and make sure your clock is correct.

As for the colors…wow. I can still read off the screen fine! And it’s wicked dim. I see sorta orange in the background but the text is nice and dark!

Do I think this will help insomnia? Doubtful. but now I can turn off my desklamp and do the computer in the dark without eyestrain. So I am saving electricity!  Nice dim room, no glare.

And this program is entirely free. I don’t remember registering it even. Dang, why pay an arm and a leg for a hypnotist when a techie does it for far less!

I haven’t had one decent night of sleep for three and a half years. I cannot sleep beyond one or two hours  consistently every single night, and I’m not manic or anxious nor do I have nightmares. Running hasn’t changed a thing. When I am under stress (such as financial) I don’t sleep any worse. I fall asleep fine but my body autmoatically wakes up and never really sleeps deeply. I’m sure it’s not sleep apnea and I’m totally stumped at this point. My former doctors refused to give me medical care nor did they provide any reasonable answers to what’s going on with me. I was refused an exam. Actually, I hope i never see another doctor for as long as I live.

However, I’m so desperate for sleep at this point that I am considering marijuana. Sleeping pills don’t do anything at all for me. But that’s a last resort. I’d rather die than ever return to shrinkage.  And I can’t go to acupuncture every day due to the cost.

Acupuncture works well. It’s more powerful than any pill, and if you’ve never tried it then you can’t say “It doesn’t work.” I can’t stand it when people are closed minded, but they’ll put any psych pill in their mouths just cuz “doctor” says it’s safe. Bunch of haughty rich assholes they are. Ditch ’em and you’ll be a lot healthier.

Five and a half hours of solid sleep last night…it’s been so long since I’ve had that much…please I hope this lasts

I went to bed at 11 last night, fell asleep immediately, and awoke at 4:30 this morning.  I couldn’t believe it. You’ve got to realize that this much consecutive sleep is highly unusual for me.  Since around July or August 2011, or maybe September, I haven’t slept more than a couple of hours consecutively.

I am a writer and at first, I thought, “This is great.  I’ll have lots of time to write.”  So I found I was sleeping maybe three and a half hours every night and then waking.  I don’t usually count hours of sleep at night and I don’t obsess over counting hours cuz I think that’s a very bad habit to get into.  I think it will cause “sleep anxiety” and worsen insomnia.  I’ve spoken on here about how I developed treatment-induced sleep anxiety from going to a sleep clinic where they made me keep charts of my sleep.  All it did was get me obsessed and more exhausted.  Total waste.

If you have insomnia, don’t count anything. Sheer the sheep, keep them nicely groomed, and knit the wool.  You might need a sweater for your dog this winter.

So I guess it was last spring…I was talking to some people and they saw fear in my eyes when they highly recommended the same sleep clinic.  I said, “Oh no, I can’t go back there!” and they shook their heads, thinking I was stupid for “refusing help.”  They kept telling me how I must have sleep apnea and how much happier I’d be if only I’d agree to sleeping with a machine!  I said no thanks, I like to sleep with my dog.

So anyway…as I have told you, Dr. P, my wonderful shrink whom I fired last July thankfully, claimed I was “running manic” and…she claimed that I got poor sleep for an entire two years due to…oh, she kept changing her tune…She wasn’t listening anyway and didn’t even know half the time what was going on with me.  The evidence was clear I wasn’t manic.  She claimed I was “mixed.”

She got away with her claim that I was “paranoid,” and I bought into that one.  I honestly believed it, cuz I thought Dr P’s word was God.  However, I started to notice a pattern.  It was the following: She would state that I was “paranoid” every time I would say that I’d received bad care.  So I would say, “I think x therapist wasn’t all that great,” or, “The staff were mean.  They shooed us away from the desk and belittled us and treated us like kindergarten kids,” or, “You remember that therapist?  She was a mean and manipulative.”  Of course, all these things were true!  I’ve heard other patients say the same things!  But Dr. P couldn’t imagine that “care” could possibly be bad.  I would even say, “People on Medicaid and Medicare have trouble finding quality care,” and she would say that this was a paranoid statement, because she said, and I quote, “People on Medicare have great care! You are paranoid, Julie!” and she would demand that I would take her drugs.

I’m very happy that I am away from psychiatry and psychiatric drugs. This, clearly, was not the answer to my sleep problem. Dr. P wasn’t even looking at my kidney levels…which were undoubtedly the cause.  In fact, no one informed me that the levels were so low or how or when they got UNDER 40%.  Yes, occasionally I would hear some muttering about “kidney levels” being “a little off,” but “don’t worry about it” and “we don’t know why” and “it doesn’t matter because this is always a tiny bit off.”

38% is not “a little off.”  And yet, due to records-sharing…this was routinely ignored and instead, I was locked up for complaining or sent home from emergency rooms and told not to waste their time because of course, everything I would mention was “all in my head.”

Do you think I’m onto something?  I love lawyers.

Anyway…I realize I’ve digressed but I can’t help but laugh a bit over this right now.  Especially in hindsight.  Especially now that my sleep is finally, finally showing improvement.  I had to do something and I was stumped, really, as to what to do.

Severe insomnia usually improves gradually, not overnight (pardon the pun).  That’s what I’ve ascertained from reading about the experience of others.  We are grateful for whatever we can get.  So if I start out with, say, one hour consecutively, and improve to two hours, I’m grateful, and then three, I say to myself, “Wow, this is fabulous!” and someone else may say, “Gee, that’s all you get?  That’s terrible!” and totally not understand.

I would suggest if you have insomnia, try everything!  I mean, try giving up caffeine and see if that works.  I did, for a long time and it didn’t work at all.  Actually, I felt far worse.  I felt deprived.  I realized that it wasn’t the problem to begin with!  I am not an every day coffee drinker and I ofter forget to drink it…not a big deal for me.  Sometimes, I drink tea.  It’s a treat for me and I like coffee, one of my joys in life, so I decided to bring it back and I also decided that for me, caffeine wasn’t The Big Sin everyone touted it to be.  Besides, weren’t all the staff at the eating disorders hospital and all those yoga-touting eating disorders therapists drinking their fancy, expensive coffee drinks every day?  Oh yes, and they’d lecture us to quit caffeine….Give up caffeine if you are sensitive to it.  Do give it a try, but if that’s not the cause, don’t sweat it or guilt-trip yourself or allow these “therapists” to tell you coffee is a sin.

Of course, there are other “sins.”  Dos and don’ts.  Try out everything and see if it applies to you. In fact, those “sins” might not be applicable to you at all.

I’ve tried yoga classes and every time, I’ve hated it.  Sorry.  It’s embarrassing sitting around saying “Om.”  Once (this was when I was overweight), I figured I’d say it offkey, and the yoga teacher, I suppose, assumed I was tone deaf.  She gave me a look.  I was laughing to myself saying, “You don’t understand lady.  Do you know I was a composer?”  I adjusted my “Om” to be on the same pitch as everyone else’s.  She gave me a condescending  smile.  I figured, “Oh, now she’s thinking that maybe the tone deaf fat girl figured it out.”  Of course, I never went back.

I hate it when yoga teachers touch you to “adjust” your position.  Eeks!  It was worse when I was overweight, too, cuz it felt condescending.  I truly admire yoginis that can do all kinds of twists and turns but yoga wasn’t for me. I couldn’t believe that “eating disorders treatment” repeatedly pushes yoga when clearly, it isn’t for everyone.  I prefer solitary sports such as running and walking my dog all by myself, where I can daydream and think up writing ideas for all of you out there.

So anyway, I HAD to do something about my sleep.  Those doctors were doing EVERYTHING to push those antipsychotics!  Of course, I knew they were bogus and I knew Dr. P wanted me to take antipsychotics to shut me up…she admitted this!  She wanted me to stop blogging and she admitted that the antipsychotics would drug me and make me sluggish so hopefully (she thought) I’d shut up on here.

Over the summer, they were even hoping to get me onto forced injections that would be time-release.  Let me explain.  This is called a Rogers order.  No, they didn’t tell me this, but I knew.  That was all in the works.  I was thinking ahead and I knew that was the ultimate plan, to have me forcibly transferred to a psych ward where I’d be court ordered onto these injections which last for (I think) two weeks, that is, the drug stays for that long in your system and you can’t get it out.  No, they didn’t admit it (of course) but I knew.  I had no clue what to do and I was frantic to weasel out of this any way I could.

I was quite lucky.  First of all, due to my kidney insufficiency, the psych wards weren’t accepting me.  I was “medical liability,” which scares them.  Secondly, I repeatedly told them I was not suicidal, which was the truth all along, and there was no viable reason for a psych hospitalization, no reason to put me on a locked unit.  These outside people came to evaluate me and decide where to place me next…that is…further “treatment,” and lo and behold, discovered I was correct!  Now, these folks were completely stumped and no way could they legitimately put me on a psych ward.  No way could that Rogers order be done. Oh, shucks.

Or at least that’s how I see it all now, and I’m laughing my butt off.  I love lawyers.

Oh, anyway…laughing my fool head off now….yes, my sleep has improved…and gradually, but I did research online, lots of it. Like mad. I came to a bunch of conclusions.

WALKING AWAY FROM THE MENTAL HEALTH SYSTEM WAS ONE OF THE BRAVEST THINGS I’VE EVER DONE.

WALKING AWAY FROM THE MENTAL HEALTH SYSTEM WAS ONE OF MY GREATEST ACCOMPLISHMENTS.

THE DECISION TO WALK AWAY FROM THE MENTAL HEALTH SYSTEM WAS ONE OF THE WISEST I’VE EVER MADE.

Proudly, caps lock, without apology, and not ashamed to do so.

I have been taking a few natural supplements for sleep and I’ll tell you more in a future post.  No hocus-pocus and nothing expensive and certainly I wouldn’t tout some overpriced vitamins or sell anything on here or tout any particular company’s brand or say, “This is the only legitimate brand,” or, “You HAVE to buy only this brand and all others are snake oil,” etc cuz I myself have bought into that and been spammed out of my mind by these people forever.  Don’t believe everything you read.  See ya later.

Enter Neurontin

I saw Dr. P yesterday and she said to me, “Julie, we’ve got to get you sleeping.  This is priority.”

Well, I agree.  In fact, if we weren’t seeing eye to eye on this one thing, I would sure not be going to her.  The situation has gotten ridiculous at this point.  I am exhausted beyond belief, having not really slept since August 2011, and now we’re into April 2013.

I guess most folks, when they are young, anyway, go to bed, sleep around eight hours, or more, I hear, if they are teens, and then get up and live their lives.   Some people tell me that they get by on less sleep and they are fine.  Everyone has their own way of doing things.

But around August 2011, I stopped sleeping pretty much.  Only a few hours.  And after that, it was rather scant.  I am not obsessive about this, so I have not been counting hours or kept charts or even writing it all down.   For me, that kind of record-keeping causes me to obsess over sleep too much, and worsens the insomnia.  That was what happened when I went to a sleep clinic once.  Well-intentioned people have begged me to go to this sleep clinic, but due to my horrible past experience there, I hesitate to return.

All I can remember is my very last session with this “sleep expert.”  Wow, I am really laughing now.  I sat across from him while he told me I had made great strides and a great accomplishment, and I was now finished with treatment there.  He was in fact emotional over this.

Of course, if I had indeed progressed with my sleep in any fashion, it may have been a poignant moment.  However, take a look at the other person in the room: the patient, me.  I was sitting in my chair, my head bobbed off to the side.  I was asleep.

Or sort of asleep.  Awake enough to hear what he said, and tell myself, “This is bullshit,” and get myself some real help. I was ridiculously exhausted from the insomnia I was experiencing.

Due to the stress from the insomnia, I went through through a psychiatric hospitalization (a huge mistake) and even a brief day treatment-type experience over the  summer (a complete waste of time).  These therapist had insisted that I needed high-duty therapy to cure the insomnia, that I had a “coping problem.”  Of course, I knew instinctively that they were wrong, told them to go to hell, and never went back.

No, there was nothing wrong with my sleep hygiene or any habits and I did not need these sleep clinic people to make me obsessed.  No, I did not have a “coping problem.”  About a week later, new doctor with a brain in his head a pair of eyes looked at my medication list and his jaw dropped to the floor.  He said, “I can’t believe you have been given this stuff.  No wonder your sleep has gotten worse and worse. Effexor is the main cause.”

Within two weeks, the entire lengthy ordeal with insomnia was solved, and I was sleeping soundly as I always did.

So now I guess it’s been a year and a half that I have had terrible sleep, sleeping only an hour perhaps at a time.  I have to go through extreme effort to get any entrance into a sleep state at all.  I do not believe anxiety or mania are the cause.  It could be caused by nutritional deficiency.  Most people with anorexia sleep poorly and have to take very strong pills to get any sleep at all, even for years after this so-called “recovery.”  (I choose not to use that word due to its overuse and many misunderstandings about its meaning, and that’s why I put it that way.  But I’ll get into this some other time.)

So, I went to Dr. P, more pills.  I do not like taking pills one bit.   For much of my life, I was medicated out of my mind.  It was the side effects of the meds, and not anything to do with “illness,” that caused me to be a social outcast back when I lived in Vermont.  Why? I guess some people felt sorry for me because I shook so much and had bad pimples.  The pimples were from Lithium.  They thought the shakiness was the illness.  For a while, I could barely walk straight.  I was sometimes heavily sedated.  People just didn’t know that my slurred speech was not illness, but from the meds. I should certainly not have been driving.

They used to say, up to quite recently, that a symptom of schizoaffective disorder, a disease I supposedly have, is “flat affect.”  However, more and more, they are discovering that this “flat affect” is caused by side effects of the medication the suffers are often prescribed.  Take away the medication, and the patient again becomes lively and expressive.

No, I am not saying “get off your meds.”  Just my observation.  I do not have “flat affect,” and when I have had it, it has always been a side effect of a medication.  I am very happy that I don’t suffer from it, because I am a writer and often have to read aloud before an audience.  If I had “flat affect,” I sure would give a very, very boring reading.  Believe me, I’m proud to say I don’t.

Okay, back to Dr. P.  She’s told me a bunch of times that she’s not happy with where I’m at now, and wants me on a huge cocktail, saying I was better off loaded up with antipsychotics.

All I can do is look back on the Seroquel nightmare I went through, which included extreme weight gain and blood sugar problems, and the resulting backfire I have been through with anorexia nervosa, and am simply bawled over, and absolutely dread taking another of these pills again.

I had a near-miss with Tardive Dyskinesia.  I was incredibly fortunate that I bypassed this horrible problem.  It was a stroke of luck for me.  My tongue was vibrating for a while and this was not my imagination.  No doctor ever saw it, but it in fact was visible to others besides myself.  Thankfully,  reported this right away to Dr. P.  When someone I know has symptoms of TD, I tell them to tell their doctor immediately.  TD is not the same as akathesia.  I well-trained doctor will not tell you it’s all in your head but will immediately take action and work with you.  I weaned off the antipsychotic  I had been on that was the cause of the tongue problem.  The tongue problem is often the very first signal that TD is beginning.

Not much later, I began to have a problem with my hand wiggling.  It was noticeable.  This was only my right hand, and when I became conscious of my right hand, the wiggle would stop.  My therapist saw it while I was in my sessions, in fact, the therapist I had back from 2008 to 2010.  I would be speaking with her, and not realize my hand was doing this thing.  She was a well-trained therapist and she was concerned, recognizing that this was no tic, of course, it was TD.  By then, though, I had already noticed it myself and reported it to Dr. P.  This, too, Dr. P explained, is another of those beginning TD symptoms that can turn into something worse if we did not take action very soon.

Risperdal, she said, was causing this.  We tapered the Risperdal in half.  It was my understanding that I would get off it it, but she left it at this half dose.  I continued to have the hand wiggle, but it was less noticeable.  One day, I quit the antipsychotics altogether, cold turkey.  I have not taken Risperdal since.  The sky didn’t fall in.  The fortunate thing was that I no longer had any type of TD symptoms.  I had escaped it all, just a stroke of luck.

Today, I speak like other people, without sounding doped up or slurring my words.  I speak with expression in my voice.  I do not have tremors and I do not twitch or have jerky limbs.  I can walk naturally.  I am so happy not to deal with pimples anymore.  That embarrassment was many years ago.

I have been talked into Abilify on and off, but it causes insomnia.  That is the reason I stopped it. Dr. P was kinda pissed, and has prescribed a variety of drugs since, including another antipsychotic, Latuda, and a bunch of addicting drugs to make me fall asleep, and now, Neurontin.  I did not take the Latuda.

I think it’s a few weeks now that I’ve been doing really well, meanwhile.  I have strengthened and empowered myself considerably, quite on my own.  It’s not due to a drug, or any therapy, but my own inner strength and simple common sense.

See, I really had no choice.  I am all alone in this world.  Me and Puzzle.  I had to get my shit together, or die, and that was it.  No one was going to do it for me.  In fact, there wasn’t even anyone out there to help, when you think about it.  After being repeatedly turned down and refused, the hundreds of calls I made, and little “help” I did manage to receive being not helpful at all or downright hurtful, I realized that it’s not just me, we are all alone here.  There is no magic in this world, no magical therapist, no person out there on whom you can rely to save your life except yourself.

I’ve been around a long time, and my experience is that if you think your therapist is God and you are relying on your therapist or some program to keep you alive, there’s a dependency problem.   It’s a merry-go-round that’s very tough to get off of.  The therapists that do this sort of therapy often get some sort of personal gratification out of these dependencies.  I’m so happy to have gotten out of the merry-go-round.  I fear this type of “therapy abuse” and I’m scared to go back into therapy for fear that I’ll end up with another abuser like the one I terminated with a year ago.

So there I was, with no therapist, no real guidance from anyone or anything except my own inner strength, intuition, gut, and survival instinct.  I tried seeing a nutritionist but I found her unhelpful and certainly not worth the expense.  I had seen one last therapist, and he turned out to be the worst dud you can imagine.  Not really a therapist at all, though he had a license, I would not call what he did therapy at all.  After three sessions, I stopped and never went back.  People tell me I should report him, due to his unprofessional conduct.  I think it will be empowering for me to do so.  The two I’d seen before were totally ineffective.  I just plain gave up.  I signed up to get a therapist at Boston Medical Center, but if this one turns out to be ineffective, I know there is no obligation to keep on showing up.  It’s not like you’re married to the person.

I guess I felt my way, rather blindly.  This is what we all do, ultimately, and we do it alone.  That is what life is.  I told myself that I need to stop eating and drinking dairy food.  I simply knew.  Having made this move has completely improved my life.  Setting up the new site and working on it, and redirecting myself in this manner has totally changed things for me.  I feel a sense of purpose.   It got me out of bed, for one thing, doing things.  I went back to church and feel pretty good about that.

Not only that, but it’s been quite a while since I have done binge eating.  This I am certain is due to stopping dairy.  I am not telling anyone else to make this move, but I guess it was something that was helpful for me.  After that, very gradually, I stopped doing the other nasty “behaviors” that I had been doing.  No one told me to stop.  No one was policing me.  No one forced me to throw away my scale or bring it to their office or bring in any chemicals as “proof” that I no longer do these things.  Heck, I am no elementary school child and I do not expect to be belittled in such a manner.  I am happy to be free of coercion.

Of course, when I went to see Dr. P yesterday, she had no awareness that I am doing so well.  Perhaps she saw a tired, middle-aged skinny lady with a dog who badly needed sleep.  I was in a cynical, dark mood yesterday.  It was sort of a downer day only because the day before was rather exceptional.  For one thing, I’d been slapped with a huge bill that no way did I expect.  I don’t want to get into it really, but it was all downright obscene and I had no way around the whole thing but to pay it off with my credit card.  It’s one of those bad luck things that can happen to any of us.  I didn’t ask for it and suddenly I’m in gigantic debt.  Of course, I was already in debt, but now it’s unexpectedly much worse.

I don’t usually sweat it over money.  But I guess I was under more stress than usual because this financial bad hit was combined with another event.  Again, I’ll get into this some other time in more detail, but I was on a bus and was witness to a hate crime.  I guess that’s what you would call it.  The bus driver was not aware that it happened and could not have prevented it, so there is no reason to alert the T.  No one was physically hurt.  No property was destroyed.  It was done with words and gestures.  I have been riding the T in Boston since 1987 and have seen a lot of stuff.  I will remember this forever, and I will tell you about it later.  So let’s just say at the end of the day, I had myself a good cry.  That was Tuesday.  Then the next day the last thing I wanted to do was to go see Dr. P, but I dragged myself and Puzzle (she sure did not mind the trip) off to Boston to see her.

She knew absolutely none of this.  We focused on sleep.  We have only 20 minutes, after all, you can’t talk about everything.  So really, she didn’t know how well I’ve been doing overall, and that it all had been overshadowed by an exceptionally unlucky day the day before.  After all, I’d just come in from another long bus ride, and every time I get on a bus, I am reminded of this awful bus incident.  I need time to process this, and allow it to heal, the way a bug bite heals, not instantly, but over time.  I can remember these bugs that bit me, and write about the experience, making it into story.  I’m very good at doing that.  It’s better than scratching the sores, because then they will worsen.

So Dr. P again tried to tell me I’m better off very, very drugged up.  But she also thinks that sleep is very important and that I need something that will knock me out.  I didn’t say anything, but I’ve heard marijuana does a good job of that.  Of course, I have no intentions of getting into that stuff due to the side effects and cost.  I also know that acupuncture will knock you out cold.  I have considered going back to acupuncture but am concerned about the side effects.  I am also concerned that if I start, there will be no end to it.  I want something short-term and I do not want to be going there forever and ever.  It is too expensive.

My discussion with Dr. P was not a bad one.  For sure, I didn’t act like an idiot.  It’s nice not being doped up and I love using my quick wit to my advantage.   As a matter of fact, Puzzle had a number of people in the waiting room entertained for about 20 minutes before my appointment began.  I doubt Dr. P knew that I had been enjoying a lively discussion with another dog owner.  She told me all about her dog.  Another person in the waiting room shared an experience he’d had with animals. All because of Puzzle.  Of course, this happens all the time when I have Puzzle with me.

On the bus ride over, I’d enjoyed helping out a foreign student by explaining what to expect this summer weather-wise here in Boston.  Of course, weather is a fun subject if you are a New Englander.  I enjoyed making a few jokes about our weather.  In fact, she laughed.  It was a fun topic, and I think I was helpful to her.

Again, Dr. P knew none of this, and only saw a tired, cynical, uncooperative patient sitting there, her fuzzy little dog in her lap.  In the end, I got handed a prescription for Neurontin and a heavy-duty sleeping pill, Lunesta.  She told me to try the Latuda and if it causes anything bad, to stop it.  I told her I’d think about it.

So I went home, exhausted.  I went to bed for a few hours.  I didn’t really sleep.  But I couldn’t even stand up or sit anymore because I was so tired.  Anyone who has experienced severe insomnia knows the feeling.  You can’t do anything but lie down.  You are desperate for rest.

I got up later, figuring what the heck, I’ll fill the prescriptions even though they will do nothing.  So Puzzle and I trekked to the pharmacy.

The pharmacist said that Latuda was brand new and they don’t really know the long-term outcome yet.  He also said it wasn’t sedating to his knowledge, and he said it was not something that would knock me out at night.  I did remember that Dr. P said I should take it with food.  That means with a meal, not even at bedtime, like people take Geodon.  She said it metabolizes more effectively that way.   He said, “Do you really want me to fill this?”  I love pharmacists, the way they are bold enough to question a doctor’s move.

I told him yes, please fill these prescriptions and we’ll see about all this.  I pay a very small copay.  But as it turned out, my insurance did not pay for the Latuda or the heavy-duty sleeping pill.  The pharmacist said that they would have to contact Dr. P, or I would have to contact her to then get this Medicare Part D to pay for these drugs.  I told the pharmacist it was okay to go ahead and contact Dr. P tomorrow andmeanwhile fill the one remaining, Neurontin.  It was getting awfully late.  Meanwhile, another person waiting for their drugs took interest in Puzzle, asked me what her name was, and we got into a discussion about dogs.  I ran into someone I know from church.  I joked around a little with him, then left.

We got home around 10.  It was miserably freezing out, and I was exhausted beyond belief.  I focused on doing what I had to do and getting to bed.  I hoped I would sleep.  Maybe a few hours.  It’s better than nothing.  A whole ton better.  So I’m not sure which order I did things in.   The neurontin bottle says, “Take one to three capsules,” and I didn’t know what to do.   It didn’t say I had to start with one and build up.  These are 300 mg capsules.  I decided, rather randomly, to try two.  I didn’t want to mix any of those benzos with it because I wanted to see if Neurontin alone would be sedating enough.  The other meds I take, the Topamax (for binge eating) and synthroid (for my thyroid) are not sedating for me, though many folks find Topamax sedating.

The results?  After I took these capsules, I guess they began to do something.  I got Puzzle’s food together and then put it in the freezer for just a few minutes to cool it.   I totally forgot about it and when I awoke in the morning, her dish was nowhere to be found.  Puzzle had been polite all night and had not complained one bit.  There was her dish, in the freezer, with her food frozen and stuck to it.  I guess this can happen to anyone, but I think the Neurontin was making me dopey toward the last bit of the night.

I really should not have chosen to give Puzzle her ear medicine while I was “under the influence,” but how should I have known?  Which ear is the left ear and which ear is the right ear?  It was puzzling beyond belief but I am positive that I did it correctly.  Not only that, but I had been assuming that Puzzle would be uncooperative about receiving the medicine.  Naw, she was fine.  All I had to do was pick up her ear (once I figured out which one was which) and squirt the stuff in.  Done.

Then, I went to bed.  I knew I was dopey, dopey, dopey.  I had not felt dopey like this for a while.  At least I was able to change into pajamas.  I was rather delighted, figuring something might happen.  At least not nothing at all.

I think I lay in bed, not feeling bad or good, just daydreaming and holding little Puzzle while she lay sleeping for about three hours.  But I knew something was different.  I noticed I had a stomach ache, an acidy feeling.  It bothered me for a bit, then passed.  It was not enough to get me out of bed.  Then, I fell asleep.  I don’t know how long I slept.  In the middle of the night, I woke up smelling something funny, and asked myself if maybe the med had some olfactory effects, then realized that my nose was very, very close to Puzzle’s left ear.  I laughed to myself, realizing that the odor was not something burning in the kitchen and not an olfactory hallucination and nothing to worry about.  What I smelled was Puzzle’s ear drops.  I know my sleep was on and off for the remainder of the night and I don’t recall when it was that I got out of bed.  I can’t say it was great sleep but on the other hand, listen up.

It must have taken a half hour, maybe an hour, and then a few more hours to confirm it.  It’s rather obvious now.  Yes, it has happened to me before, and please do not tell someone 55 years old with 32 years first-hand experience in the mental health system that this is not possible.  You could say I was markedly different when I woke up, and knew that this Neurontin is the right thing to do.  I am pleased with the changes in myself that I have noticed throughout the day, and I plan to continue to take it.  Yeah, I’m against chemicals and all that, but I’ve decided to take this plunge.

I phoned Dr. P with a question.  I wanted to know if I should take three capsules tonight.  I was just beginning this blog entry when she phoned back, and told myself that I should probably end this entry by summing up how that phone conversation went.

First of all, I told her how I’d slept in the afternoon, gone to the pharmacy, waited forever, come home late, took two, and so on, just like I’ve told you all.  I asked her many questions about the side effect I have, in particular, the very slight dizziness I experienced today.  I told her I had tested myself for ataxia, and I am not “swaying” when I put my ankles together the way I did when I took Trileptal.  I told her I was quite relieved about this, because if I have ataxia it will affect my ability to use a treadmill and put me at risk for ankle sprains.  I remember back then I was always afraid of turning my foot on a stone, as if I were 90 years old.  I told her that for that reason, I felt the dizziness was not nearly as serious a concern as ataxia, but it was annoying.  She assured me that most likely it is temporary and will go away after a week or two of taking this drug.  It is really very minor.  She said I could go up to three capsules tonight to improve my sleep.  I agreed to do so, telling her it made sense.

I guess she noticed something.  Something different in my voice or something changed.  Maybe I sounded more organized, more grounded.  Whatever she heard, something must have prompted her to ask the following question:

It was something like, “Do you still need me to go through with this insurance paperwork for the Latuda and Lunesta?”

In other words, she knows, too.  I guess she decided she’s not going to push the antipsychotic.

Hey, Julie, victory.

 

Time to heal

Recently, I have done some good and bad things and some strange things and also sent a bunch of e-mails that got no response and also made phone calls that got no response and I laughed and cried and lay in bed a lot and all that’s okay, cuz I hereby give myself permission to be a strange and quirky person.

Yeah, like I didn’t already know that and haven’t known that for years.  Even my parents knew I was a rather odd kid.  They even told me they were proud of me cuz I wasn’t the same as all the other kids at school.  Imagine that.

No, I wasn’t special needs.  Back then, they didn’t even call it that, they called it retarded.  (There was no such thing as learning disabilities, which I didn’t have, anyway.)   In fact, I was exceptionally bright.  That kinda bugged me cuz my intelligence did not make me any friends.   I learned to act dumb so that other kids would like me more.

The teachers poked fun at me an awful lot.  For everything under the sun.  Cuz I didn’t fit in.  They even teased me cuz I wore glasses.  Back then, it’s true that teachers made fun of loser kids.

Should anything be any different now?  Should I expect the world to be any different?  No.  And I should be damn proud of the quirky person I am.

Let me repeat that: I should be damn proud of the quirky person I am.

So here are a few things I did, not in any particular order, but in the order I feel like mentioning them.  And I’m tired so I’m gonna be selective about what I talk about so I won’t go on and on forever.

I went off my antipsychotic medication, Abilify.  I went off cold turkey and I think the last day of it was something like the 16th of February.  Why cold turkey?  It takes 150 hours to get out of your system, that is, it has a 75 hour half life.  So I had been up to 10 mgs Abilify.  I knew that after 75 hours, it would be like I was taking 5 mgs Abilify a day.  Then after 150 hours after the last dose, the drug would be completely out of my system.  Now is this logical and scientific?  Probably not, but on 10 mgs Abilify I was getting absolutely no sleep whatsoever, so how could I possibly think logically and scientifically if I wasn’t sleeping?  I wasn’t going to ask Dr. P cuz Dr. P would say no, don’t go off the drug, and I wanted off.  Also, after meeting with me the first time, the abusive therapist said I didn’t need Abilify and encouraged me to go off it.  He said it was a bad drug.  But I discount everything that therapist said cuz as we all know, he was bogus and cannot be trusted.

After a few days, I began to notice effects.  There were a few hours one morning when it was a little difficult to put a sentence together, but other than that, I got through withdrawal okay.  I do appear psychotic sometimes, but it’s due to my severe nutritional status, and has nothing to do with “lack of medicine.”  Is there such thing as Abilify deficiency?  I have anorexia nervosa which means severe malnutrition, and have had it for a long, long time, but Dr. P seems to forget that fact.  It doesn’t take just a few days of eating right to correct this.  It takes literally years, especially considering I’m not a kid anymore.

I’ve found there are advantages to not taking Abilify.  For one thing, sleep.  I went from no sleep at all to some sleep.  I never sleep like a normal person, but I can now sleep for a couple of hours at a time, which is an immense improvement. If I’m very, very lucky, I sleep three hours, but that’s rather rare.

And another thing that happened when I stopped the Abilify was that after a few weeks, I stopped getting edema all the time.  That awful curse that plagued me since mid-2011 was over.  There were no other changes that I can think of (or anything I feel like mentioning) so I think it was stopping the Abilify that finally ended that nightmare.  If you are dropping in out of cyberspace and wondering what the heck edema is, it means (in layman’s terms)….well, let me put it this way: it meant to me that out of the blue, for absolutely no reason, my whole body, in particular my ankles and feet and calves, blew up like balloons.  I am short so for me, this meant waking up about six to ten pounds heavier than I was the previous day for absolutely no reason.  For a tall person with an eating disorder, this might mean waking up in the morning up to 25 pounds heavier.  Now picture this on a skinny person with an anorexic mind, and you’ve got a living nightmare.  I would wake up to my anorexic living nightmare and go on a rampage every time I got edema.  Raising my feet did nothing, those stupid socks for elderly people made me look elderly and did nothing, and laying down?  Guess what that did.  The water shifted, and I got a “fat face.”

Not that I’d encourage anyone to go off their antipsychotic to end edema, but I’m just sharing my experience.  I’m not saying the two are connected, but I’ll bet they are.   I’m damn happy I don’t get edema anymore.

Dr. P insisted on giving me sleeping pills and benzos to make me sleep.  Now I have a big collection of these benzos and sleeping pills cuz at first, I filled the scripts but didn’t take them.  They are enough to knock out a horse, the pharmacist tells me.  So I do wish I was a horse, cuz maybe I’d get properly knocked out.  I have no desire to be “calm,” I only want to be completely unconscious.  While awake, I wish to be as undrugged as possible. I took them a few times.  I slept no more than the usual amount of time, and no more deeply.  So basically they made no difference.

I don’t need anxiety pills or something to “calm my nerves” which is why the few times I’ve tried, I couldn’t turn myself into an alcoholic.  I guess I don’t have it in my constitution.  I don’t get all nervous and reach for a pill or the bottle.  I’m not scared to tell part of my life story to a complete stranger and make them laugh and smile on the bus and I’m not afraid to get up in front of a huge group of people and speak.  In fact, that’s something I love to do.  I’m just not one of those anxious people that has panic attacks or the sweats or the shakes or anything like that.  I can relate to people who have had hard lives, cuz I’ve had one too, but calming myself with chemicals and getting addicted doesn’t seem the route to go.

Okay, what else have I done………

You guys know, or maybe you don’t know, that I dislike asking folks for favors.  Why? When I do, the answer is “NO.”  So I don’t ask.  The reason people say no is because I’m not Miss Popularity, first of all, and I’m not sweet and kind like I used to be, and everyone’s a little bit afraid of me these days.  Well, that’s fine.  Be scared, and I’ll be scary.  But no, what I’m saying is, everyone’s got their family, and family comes way, way before me.

So even making a phone call, I pretty much expect that the person, if they know it’s me, they aren’t going to pick up, or they won’t bother returning the call.  Except for my minister, but he goes into “minister mode,” as he puts it jokingly.  And yes, the suicide hotline picks up when I call.  I’m glad of that.  I’ve even had people tell me not to call them, but “e-mail only” because they are “too busy.”  Let met tell you, that line gets old very fast.

But I accept that people are gonna be this way.  I accept that I am way, way too quirky and weird for people and that’s fine.  I am proud of who I am.  I think I was born this way.  I think my dad would be proud, too.

So I asked a huge favor and so far, I’ve had no response and I don’t expect one.  I have a doctor appointment next Tuesday and I asked at a few folks at church if someone could come with me to the appointment.  No, I don’t need a ride.  I do our public transit just fine.  I need someone to be with me at the appointment.  See, I was alone with that abusive therapist and no one else was there.  This is a male doctor I’m seeing and it’s not so much that, but what if he doesn’t “get it”?  Most doctors don’t understand eating disorders.  Some barely know what eating disorders are.  What if he only asks about my periods and nothing else?  I am going to this new doctor mainly so I can get a referral to a therapist.  Maybe even a referral to a nutritionist and since it’ll be at a big hospital, it might be covered on insurance if they make some exception for me down the line but of course the nutritionist might not know about eating disorders, many only know about diabetes.  So I asked for this favor but I guess it’s way too much to ask.  So I’m hereby giving up on this plea and have accepted that I’m gonna be going to this appointment by myself.

Well, no, I’ll have Puzzle with me.  Did I tell you Puzzle can count?  I’ll have her count how many questions this doctor asks about my periods.  After three, she’ll bite him.

Now, furthermore, all you folks out there with eating disorders, what’s the worst most nightmarish thing you’ve ever heard come out of a doctor’s mouth?  I’ve heard some pretty bad stuff.  Now I’ve got Puzzle trained on cue.  I’m just imagining this:

“So, you’re anorexic and you binge occasionally, too?  I think if you shove in three extra large pizzas all at once, it’s a good thing, and you should do it more often, cuz you could stand to gain a few pounds.”

Now as soon as Puzzle hears that line, she’s gonna maul the doctor to bits, and enjoy all the pizza, too.

 

 

Reconsidering antipsychotic medication and elevated liver levels: My visit to Dr. P today

My visit with Dr. P was so-so, or okay, or interesting, depending on how you look at it.

We discussed my liver levels and why the heck they are elevated.  I guess she’s just doing her job wondering if she should change my antipsychotic medication, Abilify, to something else.  She notes that while I was not on any psych meds in July, my liver levels were okay, and now my liver levels are not okay.  Also, she feels my thyroid med should be adjusted, and Dr.  K, my primary care doc, wanted to hold off on it.  But Dr. P says if we adjust the thyroid med, I might sleep better.

Right now, it showed up on the blood test that the TSH is high or low or whatever, meaning that the synthetic thyroid hormone I take should be tweaked.  This is done purely by blood level.  These thyroid meds are not psych meds.  The thyroid is a gland, part of the endocrine system that controls many body functions.   My thyroid shut down many years ago.  This is quite common among folks that took Lithium and it’s not a big deal, or so they say.  If your thyroid has shut down like mine has, and you don’t take the thyroid pill, you can get extremely messed up over time.  Dr. P said this may be why I get cold easily.

Regarding the Abilify, Dr. P went down the list of antipsychotics and said they basically all get metabolized in the liver and can mess up your liver…gee.  Lovely.  She asked me about Haldol and I said I did not want to risk TD.  She mentioned Risperdal and I said I cannot take Risperdal because this med gives me TD as well.  Then she brings up Seroquel.

She’s got to be absolutely kidding me.  Hate to use the word Evil but that’s what the stuff is.

Dr. P, the Seroquel caused the following:

It caused REACTIVE HYPOGLYCEMIA, which I still have.

It caused FOOD ALLERGIES to WHEAT and MILK, which I still have.

It caused me to more than double in size.  Subsequently, I was discriminated against, not only by the general public, but even worse by the medical profession (I have a lot to say about this), I suffered low self-esteem and a knee injury.  I was a shut-in for over three-months because I could not walk and paid $500 to people who walked my dog, because I couldn’t.

Then, the plot on the part of the docs that originally gave me Seroquel in large doses (year 2000) to get me to gain weight backfired and I had a relapse with anorexia nervosa and almost dropped dead.

No, Dr. P, no Seroquel, thank you.   I don’t take weight-gainers.  I know better.  You don’t give them to people with a history of eating disorders, remember?

I told her I was walking a tightrope with paranoia, that I didn’t want to raise the Abilify dose and didn’t see stopping it as an option, either.  But I sort of do see stopping it as an option…well, maybe.  I told her I have to be very, very careful about how I think, that I can’t get too negative or it gets into the domino effect and turns into paranoia.  I gave the example of how I get edema, and how that dominoes into feeling physically lousy and that “heavy” feeling, how I “feel fat” and don’t want to eat. I could say that I “trudge” instead of walk, and the bounce goes out of my step.  People say that it doesn’t slow running, but of course, it does, because it’s like carrying a large canteen of water inside your body while you run and while you do everything.  If you have edema, your body has actually expanded to accommodate extra fluid inside your body.  This past week, my skin was stretched, cracked, and bleeding again.  Old memories were bugging me and making me feel negative.  This was bad breeding ground for paranoia.  Yesterday morning, the edema had improved, and correspondingly, so did my attitude, and my running speeded up as well.  I did my eight laps faster than ever before.

So Dr. P asked me when my next appointment with my primary care doc was, and I said, Tuesday.  We talked about other stuff and she gave me anther sleeping pill to try.  I told her about how the other ones didn’t work.  I asked about the side effects of this one and she said, “Sedation.”

Well, gee, Dr. P, what else?

She said she is giving me a pediatric dose, and if we have to go lower, she’ll give me the liquid form.  “Kiddie dose,” she called it.

They give this stuff to kids?  Why?

I don’t feel very good about drugging kids.  Well, never mind that.  I just looked up this drug.  It’s like, wicked addicting.  Doesn’t exactly sound like something I want to take.  Oh well.  Should I even try it one night?  I”m kinda nervous about popping this stuff.

Crazy insomnia

I’m determined to solve this one without drugs!  And I will.

Yeah, I took a pill for it two nights ago and it solved nothing.  I had more hours of sleep but the sleep quality was worse than my usual sleep and I was groggy all day.  I had a headache, too, and felt real sick.  It was certainly not worth it!  These pills are addicting, too.

Dr. P said she’d give me anything I would take.  She tried to put a psychiatric label on me, saying at first that I was manic. I said, no, Dr. P, I haven’t been manic.  I said I am just getting over this bad depression, really, but no way am I manic.  She said, “Well, then, you are mixed.”

Oh, please, Dr. P, quit the labels.  I am not mixed.

Let me explain.  Mixed means you are both manic and depressed at the same time.  It’s like an “agitated depression.”  People say it’s torture.  I say it probably sucks whatever you want to call it.  Either way, I do know that right now, I am not anxious, either when I fall asleep or when I wake up in the night, nor do I wake up because of nightmares, racing thoughts, or anything emotional.

Occasionally, I am awake in the night due to muscle cramping.  No, not menstrual cramps.  No, not hot flashes.  No, not night sweats.  I am talking about Charlie horses in my fingers or my feet or my toes.   This could be due to dehydration.  It could be connected to my diabetes insipidus or something to do with my kidneys.

I’m toying with the idea of (now really, don’t go hollering) revisiting my whole experience at Mass General in 2011, I mean the psych unit there.  I want to see my records.  I found out that I have that right, and I found out that not only that, I have the right to make corrections and I have the right to verify that these human rights violations were done…..I need a lawyer, I think…..because I think there was some kidney damage done.

Let me explain.  This is not well known.  They do have an eating disorders program at their psych unit.  Folks don’t know about it.  It’s a teensy eating disorders program.  They imprison their patients inside an “inner” psych unit, which is inside their regular psych unit.  Now I’ve talked to patients who have been on Blake Eleven, and they didn’t even know that the “inner” unit existed!  It is there, but they keep it hush-hush.  They keep the really sick patients inside this inner unit, and they hide the eating disorders patients inside the inner unit to keep them under lock and key.  While I was there, they limited me to four glasses of water a day.

Now you’ve heard me rant and rave over this and you’re probably sick of it.  This four-a-day regimen ravaged my body.   As a person with DI, I am accustomed to a couple of gallons a day.  A person with DI often drinks gallons a day and this is completely normal.  We folks with DI normally drink copious amounts of water.  Many people who experienced lithium toxicity back in the olden days ended up with DI.  Now, we are older and so long as we have our water, we will live normal lives.  The goal is to follow our thirst cues.  We will not develop electrolyte imbalances, curiously enough.  Our bodies have adjusted over the years.

I believe that I am still suffering from the deprivation.  It doesn’t help that I was traumatized as well.  Nor does it help that I was hospitalized in February 2012 and further deprived of water, put on a water restriction for a week until I had the water restriction lifted.  But it wasn’t as bad as the four-a-day at Mass General.

Whenever I’ve gotten out of the slammer, the first thing I’ve done is to come out and hydrate myself.  There were a handful of nurses there that “got it” but only because they had friends or acquaintances who had DI.  One told me about a friend of his who brought a water jug to the classroom, and drank the thing down during class.  It’s completely normal.

Some people with DI have to take drugs for it.  It depends on the cause.  There are other kinds besides the kind that is caused by lithium.  Some originate in the brain.

One way or another, I have to solve the insomnia that I am experiencing.   I’m going to try a new idea.  I’ll let everyone know what it is very soon.  Until then,  I will keep my idea to myself.  I’ll try it and see what happens.  One thing I will tell you is that it is not a pill!